BMS936558* Votrient trial (formerly MDX 1106) John's 18 week scan
Comments
-
Stable is good!alice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Stable disease is perfectly acceptable! Be thrilled and delighted. There's time for disease regression in the next 12 weeks! The important thing to know is how does John feel? Does he feel like his "old self"? I keep waiting for that to happen to me, but I am so weary sometimes. If John feels good, has energy, and is happy then that is what is really important.
If John has to change from Votrient to Affinitor what will that mean to his participation in the trial? We he still be able to get the MDX?
I'm thinking about you guys, Alice. I would be thrilled with "STABLE". God bless you both.
Love, Paula xo0 -
Stabletacyarts said:Stable
Stabilization is still positive, I am happy for you with no growth. I'm sure that you are still a little frustrated but try to stay positive with the fact that you have 46% tumor reduction. Keep fighting!!
Thanks Tacyarts - right back to you.
I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .
On one of your appointments, hope to meet you in person at Hopkins!!! Let her know both of you are in my prayers.0 -
Stabletacyarts said:Stable
Stabilization is still positive, I am happy for you with no growth. I'm sure that you are still a little frustrated but try to stay positive with the fact that you have 46% tumor reduction. Keep fighting!!
Thanks Tacyarts - right back to you.
I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .
On one of your appointments, hope to meet you and your wife in person at Hopkins!!! Know you both are in my prayers.0 -
Stray catalice124 said:Stable
Thanks Tacyarts - right back to you.
I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .
On one of your appointments, hope to meet you in person at Hopkins!!! Let her know both of you are in my prayers.
The name of my restaurant that I own is called The Stray Cat Cafe. www.straycatmoorefield.com0 -
Stablealice124 said:Stable
Thanks Tacyarts - right back to you.
I have to ask -- Stray Cats -- is that named for your wild and unattached friends or the four legged creatures? Since feral/stray cats are a part of my life and volunteerism, just wondering. . .
On one of your appointments, hope to meet you and your wife in person at Hopkins!!! Know you both are in my prayers.
Alice, don't you mean that the "shrinkage" has stabilized? Next scan would tell so much more. I think it is too early to plan a change of action. That would be my argument.0 -
No New Growth is great!!foxhd said:Stable
Alice, don't you mean that the "shrinkage" has stabilized? Next scan would tell so much more. I think it is too early to plan a change of action. That would be my argument.
Alice,
I know you and John are not completely thrilled with the latest CT but NO NEW GROWTH is a very good thing. It'd be interested to hear from a longttime veteran of these targeted drug therapies to find out what the "norm" is re: TDT progression. I mean, is it not uncommon at all to have impactful shrinkage initially that slows down a bit over time, stablilizes and then increases again? Or once the shrinkage slows does it tend to not increase again?
I hope you and John can kick back and enjoy these next 12 weeks. It'll take you right through the holidays!0 -
Hi Alice and John....heyalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Hi Alice and John....hey stable is very good!! Not to worry.. I read that it is a good sign if it remains stable, it means the disease is being fought and having a tough time trying to grow. Stable will keep him on board for the trial. Please try not to worry too much about it. Try to enjoy the days ahead, each day has it's own anxieties so take one day at a time! John is doing great! If he is stable then like Fox said, no need to switch treatment at all. Keep going strong my friend, and thank you for the reminder....xxoo0 -
Excellent Newsalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Your own words are key here Alice, "more importantly, no growth". I am pleased to read about John's progress. Though this check up didn't bring the exact news you were hoping for, I can tell that you are still so very grateful. You sound like an amazing support to John and I wish you both all the best over the next few months. I would agree with many of the above posts, no time for panic just yet. Fingers crossed for more good news x Mel0 -
A short breather is all...alice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Hi Ali,
Not what you were hoping for, but way better than the alternative. I think they asked fox "If we can't cure you, would you be happy with being stable?" to which he replied "HELL YES!" and he has had some "slow downs" with good results at the next scan. Progress has slowed, but not stopped. Stable is good for now, but I suspect though that the RCC is only enjoying a short respite before MDX comes back from vacation and kicks its **** some more. It has no idea who it is messing with!!
Hang in there,
Gary0 -
24 Week Scanalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Thank you all for your pick-us-up comments. You are all right; this is good news. MyBad. No more whiney posts just happy, grateful ones.
John just celebrated his one year anniversary (cancer diagnosis) and the difference in how we feel now compared to then is astonishng. Standing in that Doctor's office a year ago getting the kidney cancer with metastisis diagnosis was like being sent to death row. And now with all the options and possibilities out there, we both feel blessed. We also feel the soulnergy we can always count on from all of you. Thank you so much for reigning us back in when we step outside that beam of light we all provide each other.
Just to verify, John is still in BMS936558/Votrient trial. I know I confused some with the mention of Afinitor, but you're right Fox; it's too soon to think of that.
As far as the verbage used by the research team as far as his scan:
"Report shows everything is stable. This is good news - I know we want to see continued shrinkage, but stable disease is good as well."
And then I responded back: "Is stabilization ever followed by more reduction? I know this is all relatively new but thought I'd pick your brain for experience thus far."
And I received this answer this morning from his Research Nurse. "Yes, we may see some further reduction. Doing scans every 6 weeks makes it really hard to notice small changes. John will now have scans once every 12 weeks, which is the standard of care for kidney cancer. We will see what the RECIST read shows for this CT, and then see what his scan in 12 weeks looks like. If things still look stable at that point, we may consider him to have leveled off - again, stable disease is not a bad thing either!"
So bottom line we're feeling much more positive today. Like some of you mentioned the holidays should be free of scanxiety and --by the time the next scan rolls around--I'll be retired (February 1). YES!!! Life is good and so are all of you; thanks again.0 -
24 Week Scanalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Thank you all for your pick-us-up comments. You are all right; this is good news. MyBad. No more whiney posts just happy, grateful ones.
John just celebrated his one year anniversary (cancer diagnosis) and the difference in how we feel now compared to then is astonishng. Standing in that Doctor's office a year ago getting the kidney cancer with metastisis diagnosis was like being sent to death row. And now with all the options and possibilities out there, we both feel blessed. We also feel the soulnergy we can always count on from all of you. Thank you so much for reigning us back in when we step outside that beam of light we all provide each other.
Just to verify, John is still in BMS936558/Votrient trial. I know I confused some with the mention of Afinitor, but you're right Fox; it's too soon to think of that.
As far as the verbage used by the research team as far as his scan:
"Report shows everything is stable. This is good news - I know we want to see continued shrinkage, but stable disease is good as well."
And then I responded back: "Is stabilization ever followed by more reduction? I know this is all relatively new but thought I'd pick your brain for experience thus far."
And I received this answer this morning from his Research Nurse. "Yes, we may see some further reduction. Doing scans every 6 weeks makes it really hard to notice small changes. John will now have scans once every 12 weeks, which is the standard of care for kidney cancer. We will see what the RECIST read shows for this CT, and then see what his scan in 12 weeks looks like. If things still look stable at that point, we may consider him to have leveled off - again, stable disease is not a bad thing either!"
So bottom line we're feeling much more positive today. Like some of you mentioned the holidays should be free of scanxiety and --by the time the next scan rolls around--I'll be retired (February 1). YES!!! Life is good and so are all of you; thanks again.0 -
ATTA GIRL!!!alice124 said:24 Week Scan
Thank you all for your pick-us-up comments. You are all right; this is good news. MyBad. No more whiney posts just happy, grateful ones.
John just celebrated his one year anniversary (cancer diagnosis) and the difference in how we feel now compared to then is astonishng. Standing in that Doctor's office a year ago getting the kidney cancer with metastisis diagnosis was like being sent to death row. And now with all the options and possibilities out there, we both feel blessed. We also feel the soulnergy we can always count on from all of you. Thank you so much for reigning us back in when we step outside that beam of light we all provide each other.
Just to verify, John is still in BMS936558/Votrient trial. I know I confused some with the mention of Afinitor, but you're right Fox; it's too soon to think of that.
As far as the verbage used by the research team as far as his scan:
"Report shows everything is stable. This is good news - I know we want to see continued shrinkage, but stable disease is good as well."
And then I responded back: "Is stabilization ever followed by more reduction? I know this is all relatively new but thought I'd pick your brain for experience thus far."
And I received this answer this morning from his Research Nurse. "Yes, we may see some further reduction. Doing scans every 6 weeks makes it really hard to notice small changes. John will now have scans once every 12 weeks, which is the standard of care for kidney cancer. We will see what the RECIST read shows for this CT, and then see what his scan in 12 weeks looks like. If things still look stable at that point, we may consider him to have leveled off - again, stable disease is not a bad thing either!"
So bottom line we're feeling much more positive today. Like some of you mentioned the holidays should be free of scanxiety and --by the time the next scan rolls around--I'll be retired (February 1). YES!!! Life is good and so are all of you; thanks again.
Now that's the Alice we all know and love.
As far as retirement goes, throw yourself a party;
Retirement Party
The boss is finally old enough to retire from the company. On his last day of work, he ordered a farewell party for himself. The boss wanted everyone to express their good feeling about him by writing on the farewell card, so later he could remember how his staff "miss" him. Most people are writing standard phrases like, "Without you, the company will never be the same," "We will always remember you," etc.
Obviously the boss was not satisfied. "I need something from the bottom of your heart, something really touching, you know. Okay, John, you have been working with me for the last 20 years. You are my best staff. I am retiring now. What do you have to say?"
Slowly but firmly, John wrote, "The best news in 20 years."
Hope you're not the boss,
Gary0 -
Stray Cat Cafetacyarts said:Stray cat
The name of my restaurant that I own is called The Stray Cat Cafe. www.straycatmoorefield.com
Thanks for the link. Your place looks like fun - vibrant, glowing, alive - looks like just the place for an old dog Fox. Also seems like just the diet of that cool cat of ours!!!0 -
At least no new growthalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Alice,
No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.
Karen0 -
At least no new growthalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Alice,
No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.
Karen0 -
At least no new growthalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Alice,
No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.
Karen0 -
At least no new growthalice124 said:24 Week Scan
Hi all,
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
____________________________________
John’s History at Johns Hopkins:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)
5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
10/24/2012 - CT scan reflected stabiliztion
Alice,
No new growth is good but I know how you feel. My husband's 3 month scan was great, then 10 weeks later and his shrinkage had enlarged with new spots. My husband started Afinitor and I am very interested in knowing how he does with that. I will keep you and John in my prayers and will let you know how my husband does with Afinitor.
Karen0
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